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One of the most common mistakes that brain injury survivors’ loved ones make after an injury is not giving the survivors enough time to respond or take an action. For instance, a survivor and his family may be at a restaurant for dinner. When the survivor is struggling to place his order, a family member may jump in to place the order for him. If given enough time, the survivor may have been perfectly able to place the order but the family member did not give him enough time to respond.

There are a few reasons why survivors’ loved ones tend to not give enough time to the survivor to respond or take an action. One reason is that silence is uncomfortable. For instance, if a survivor is needing extra time to respond, the silence may be so uncomfortable that the loved one will jump in and speak “for” the survivor. A second reason is that is uncomfortable to watch someone struggle. As an example, a survivor may be slowly, and with great effort, reach toward an item on a table. The loved one may be so uncomfortable watching the survivor’s struggle that they reach over to get the item for the survivor. A third reason is the feeling that the survivor and loved ones are in a rush or feel like they are causing someone else to slow down. For instance, a survivor in a wheelchair may be pedaling down a hospital hallway but family members, concerned that the wheelchair is blocking the nurses, decide to push the survivor’s wheelchair to more quickly reach their destination.

However, it is important to give the survivor more time. First, and most importantly, if the survivor is able to make a response or take an appropriate action when given extra time, they should be allowed the independence and respect to do so. By unnecessarily jumping in, loved ones are taking away the power and the dignity of the survivor to take care of their own needs. Second, although a survivor may need extra time and effort to complete a task, they are more likely to get faster and more efficient over time with practice. By doing the task for them, the loved one is taking away vital practice from the survivor who is trying to master a task. Third, the survivor may need extra time to safely complete an activity. After an injury, certain tasks may have concrete steps which take time or require more processing time to successfully finish without risk. For example, most uninjured individuals simply stand up when they are ready to leave a room. A survivor may have to go through multiple steps to safely transfer from sitting to standing. These steps require extra time so the survivor can safely transfer.

When wondering about the survivor’s need for extra time and if they should jump in, loved ones should ask themselves the following questions:

1. Is the task truly out of the survivor’s skill range or do I just need to be more patient to allow them to complete the task?
2. Are we actually in a rush or is a little extra time a reasonable request? For example, if a survivor needs an extra ten seconds to place an order at a restaurant, keep in mind that the waitstaff is getting paid to serve you. Ten extra seconds is not an unreasonable request.
3. What message am I giving to the survivor if I do not allow them to do for themselves when they are able to so?
4. Is the issue really about the survivor needing extra time or my personal discomfort in this situation?
5. By going faster, have I compromised my or the survivor’s safety?

In most cases, a little extra time will help a brain injury survivor be more successful and allow everyone to have a better experience!

As modern medicine improves and our population ages, more individuals are able to live longer with serious health issues including permanent deficits resulting from a brain injury. This notable demographic shift places more loved ones in the position of serving as long-term caregivers. These caregivers need all available support from those around them but many of those capable of offering assistance are simply unaware of how best to help. Here are a few quick suggestions on how to support caregivers:

1. Call them and ask how you can help. Caregivers may feel shy or embarrassed to initiate requests for help but are often far more receptive to assistance if it is offered. This gives caregivers opportunity to request specific aspects of help most needed at a given juncture, and they will certainly be grateful for all help shared.

2. Offer to have the caregiver and survivor over for a meal or to deliver a meal to them. With all of the responsibilities that caregivers meet on a daily basis, having someone else take care of even a single meal can be a source of welcome relief.

3. Be there to listen. Many caregivers feel overwhelmed by their experiences. A friendly phone call or visit with a supportive ear helps relieve some of this emotional burden. Knowing that others care about their well-being is very important for caregivers in maintaining their own emotional health.

4. Be a friend to the survivor. After their injuries, many survivors find that their social circles quickly shrink. Some caregivers can find themselves serving as the only social outlet for the survivors in their lives. This can be a source of tremendous additional stress in the life of a caregiver. Being a part of the survivor’s social circle reduces the need for the caregiver to fill all of these social roles. Moreover, the survivor is sure to appreciate this as well!

5. Offer to spend time with the survivor so the caregiver can spend a little time tending to his or her own needs. As a result of devotion to meeting needs of a survivor, it’s all to easy for caregivers to end up neglecting their own. A few brief hours just to cover an unhurried trip to the grocery store, hair salon or doctor’s office (or simply to enjoy a quiet cup of coffee on their own) can do wonders for a caregiver’s quality of life.

6. Take a moment out of your day to send a card, e-mail or flowers. Sometimes we don’t have a lot of time to spare for lengthy calls or visits but a quick note to say “hello” tells the caregiver that they are not forgotten.

Hopefully this list will give you ideas to start reaching out and supporting caregivers!

Following a brain injury, family members will often spend every possible moment dedicated to efforts in support of an injured loved one and devote special attention to helping that survivor get the best care possible. They with rare exception will spend countless hours on the phone battling insurance companies and filling out forms. These family members must deal not only with stressors directly related to worrying over a loved one’s health, but must make peace with planning for a suddenly very different future and must manage (sometimes alone) a freshly revealed terrifying financial mine field.

Brain injury survivors themselves also face an enormous number of stressors as they struggle to regain command of basic skills and learn different ways to perform common tasks. However there is a major difference in this regard between the brain injury survivors and their family members, particularly while the survivors are in rehabilitation. The brain injury survivors are surrounded throughout the day by professionals trained in the treatment of brain injury who can help with mood, education and adjustment. Survivors merely need look to their immediate surroundings to find an abundance of professional help to address any difficulties. Family members generally do not have anything approaching such a level of support so readily available. With all this in mind, it becomes clear just how thoroughly brain injuries are in fact a family affair. All members of a family are affected, not just the brain injury survivor. Likewise, all family members are part of the team necessary for managing long-term effects of the injury. It is important that all members of the team (not just the survivor) are receiving the help and support that they need in order to adjust to these major life changes.

At TLC, staff commonly ask survivors’ families, “Are you getting help?” and “How can we help you through this process?” It is important that family members do not neglect themselves while giving all they can to aid injured loved ones. Such care taken is in the best interests of both the personal health of the family members in question and the optimal well-being of the survivors they support. Caregivers with high stress levels often find themselves more susceptible to physical illnesses than the average person. A family member side-lined by illness can offer only a fraction of the aid and support he or she would wish to. Further, family members deserve to be allowed to live their lives to the most complete level of happiness possible (just like the survivors deserve to). Put simply, if these family members are struggling themselves then they are placed in a severely disadvantaged position from which to help the survivors in their lives.

Family members of survivors should consider personal therapy and support groups as aids for their own psychological and spiritual adjustment (Both the Brain Injury Association of America and the American Stroke Association offer listings of local support groups). These family members can often benefit from reaching out to friends and community resources in order to better address the management of difficulties. Seeking help is not a sign of weakness but is instead a common sense step taken in the interest of maximizing both individual and family success and happiness. Brain injuries are complex and stressful. Family members should not pretend to be super-humans capable of handling anything and everything. They should actively ask doctors and therapists for information on brain injury prognoses, education resources and proven strategies helpful in planning for the future. Overall, one of the most important ways that family members can contribute to the advancing well-being of survivors in their lives is to remain sufficiently mindful of their own.

Fields related to the treatment of brain injury have improved by leaps and bounds over the last twenty to thirty years. People who have suffered severe traumatic brain injuries are today surviving from injuries that would have once been fatal. Health care professionals are able to manage associated medical issues and injury deficits left in the wake of traumatic brain injury better than ever before. This has led to brain injury survivors with serious impairments being able to live longer than could have been imagined just a short time ago. This also then means that many of these survivors will have need for others to serve as caregivers for them many years into the future (in some cases even for decades). These caregivers may be called upon not only to help with day-to-day activities but also may be legally responsible for making medical, legal and financial decisions. This brings us to an important question for those caregivers to consider. If something decisively unfortunate were to befall such a caregiver, have contingency plans been made to ensure that those care and legal responsibilities would continue to be sufficiently addressed? For example, let’s say that a forty year-old man survives an aneurysm which leaves him unable to make his own decisions and subsequently his sixty-five year-old mother takes over these responsibilities for him. A man that young in reasonably good health could fairly be expected to live at least another twenty years under such a circumstance, which would then put his mother at eighty-five. Can anyone guarantee that his then eighty-five year old mother would continue to have the ability to make such decisions for him? What happens if she faces a health issue such as Alzheimer’s or cancer that would effectively dismantle her ability to make his decisions for him? Can anyone even guarantee that she will survive all the way to eighty-five? Clearly, a plan needs to be put in place to designate a replacement to step into the mother’s critical role in this man’s life should she suffer incapacitation or pass away.

Putting together such a plan is no simple task and in many cases families will need to consult an attorney in order to formulate a coherent, legally binding plan. These plans will generally involve issues such as daily care, financial management and legal responsibilities. Questions have to be answered such as where the survivor will live and who will monitor disability or like payments should a current caregiver be unable to continue in his or her role. Also, plans may need to be updated over time to reflect changes. Using the earlier example, let’s say that in the mother’s will she appoints the survivor’s uncle to take over the legal responsibilities in her son’s life after she’s gone. If this uncle’s wife developed a serious illness that suddenly demanded all his time and energy, the mother would likely want to update her will and appoint a new person to be responsible in case she became incapacitated or passed away. Sometimes multiple people are listed in the plan (often in descending order), identifying a line of succession regarding those responsible for seeing to the survivor’s well-being. This even further bolsters guarantee of a survivor’s continued security. Sometimes roles are also divided among different individuals. As example, one person may be responsible for daily physical care while a different person might be assigned ultimate authority over medical decisions. No matter what plan is put in place (for this or for any other issue), the brain injury survivor should take part in the planning to the best of his or her abilities.

Planning for the future is a serious issue and should be started as early as possible. Most survivors’ brain injuries make entrance into life suddenly and without warning, and caregivers can just as abruptly have their own issues present that prevent them from maintaining their caregiver roles. For those that do not have the financial means to hire an attorney to develop a plan, there are legal aid offices throughout the United States that provide free legal services. Follow the link below to search for a legal aid office in the United States.

Families of brain injury survivors are often the unsung heroes of the injury experience. They are the individuals who insisted the doctors not give up on their loved ones. They are the individuals who spent the sleepless nights on uncomfortable hospital chairs and stressful days trying to hold a chaotic home life together. They battled the insurance companies for hospital and rehabilitation coverage. They support the survivor in countless ways during rehabilitation and then beyond the point when formal rehabilitation services conclude. However, many family members and friends fail to adequately appreciate the burden that a caregiver is under. Even some of the primary caregivers themselves may not fully recognize the difficulties they are experiencing. The stress and problems due to caregiver burden can lead to those caregivers experiencing a decline in both physical and mental health.

When a person is injured, families often get a sudden call from the hospital warning them that they must come as quickly as possible because their loved one is hurt and may die. It is important to appreciate this terrifying experience. Life is instantaneously turned upside-down. Family members run off to the hospital not knowing what to expect. Often they come to an emergency room to find their loved one hooked up by a number of tubes and hoses to a variety of machines. In the case of an accident, the loved one may well be horribly bruised and bleeding with broken limbs. Doctors likely will come over to advise the family of the terrible news and to inform them of the potential severity of the injury, often relaying death as a possible consequence. Family members are thrust into the position of caregivers required to make life-and-death decisions. They may be asked to consent in their loved one’s place for complex surgeries such as a craniotomy (in which part of the survivor’s skull is removed to counter swelling and bleeding in the brain). Even with these life-saving procedures, families are warned that their loved one may not survive. This may then leave families forced to wait on pins and needles for days on end. Their loved one may be in a coma for days, weeks or even longer. During such a period, family members may rightfully worry whether their loved one will ever wake up at all. The newly injured person may suffer setbacks such as seizures or infections such as MRSA, each of which bringing with it new risks and fears. At every step family members are forced into the role of caregivers, being updated by doctors and attempting to make the best of often unpleasant situations. In some cases, family members are the first to find their injured loved one following the brain injury or actually even had the misfortune of watching the injury as it happened. In these cases there is the added terror of having to summon an ambulance while helplessly watching as a loved one suffers. This can be not only an incredibly scary moment but also an incredibly lonely moment as the family member stands alone, staring at the clock and hoping the ambulance will arrive in time.

These injury events are often the start of the caregiver burden experience. The caregivers undergo a physically and mentally exhausting experience and though their loved one may survive, the injury event experience often leaves a permanent emotional scar. This is a traumatic event, similar in some ways to the trauma someone may experience watching a fellow soldier get shot in battle. There are feelings of fear and helplessness as little is left to do but watch as a loved one fights to survive. Caregivers may have nightmares regarding their loved one’s injury. They often go throughout the day worrying that their loved one will suffer subsequent injury and decline or even worse, die. In some cases, caregivers blame themselves for their loved one’s injuries. They may tell themselves, “If only I hadn’t let her have that last drink, she would have never been in that accident” or “If only I’d made more of an effort to ensure that he’d eaten better, he would have never had this stroke”. For some caregivers the date of the injury becomes an anniversary of a new life. For others it will forever be known as the anniversary of a death of life as they knew it, no matter how much their loved one improves.

With this in mind, it is vital for caregivers to acknowledge the enormity of the injury event and to allow themselves to work on the resultant emotional experience. Caregivers need to give themselves permission to reach out for help and support. It is important for those in the caregivers’ lives to help support these caregivers and provide a safe space for them to share their experiences (of course only up to the level with which the caregivers are comfortable). Often, rehabilitation therapists are the first to notice the caregiver burden and to offer to help caregivers with these abundant concerns. In many cases, caregivers benefit from counseling and/or psychotherapy in efforts to work through their emotional experiences. A well-defined medication regimen appropriately tailored to an individual’s needs can also aid substantially in attaining emotional balance. Some family members may benefit from meeting with clergy so as to aid in their spiritual recovery from this experience. Also, brain injury and/or stroke support groups can be very useful in managing the emotional impact of this experience.

I hope this post shed some light on the caregiver burden as it specifically relates to the initial injury event. Feel free to comment below with any questions.